Prayers for Grayson

I have been struggling with whether or not I should post this. I just don't want anybody to feel sorry for us or my Grayson. We couldn't be more thankful for our precious baby and would not change a THING about him! But, I decided that the more people praying for my Grayson, the better!

Grayson has been diagnosed with Pfeiffer syndrome. This is the same genetic disorder that Michael has. We have always been aware that all of our children have a 50% chance of being passed this. The main concern with Pfeiffers is the risk for craniosynostosis. This is when the bones of the skull fuse too soon and do not grow properly making room for the brain.

When Grayson was born, we did notice that he seemed to have a "lazy eye" and a slightly crooked nose. We thought it was all due to his position in the womb. When these didn't get much better, our pediatrician referred us to ENT for his nose and an eye doctor.

When we saw the ENT doctor, he was not at all concerned about his nose (since he has no difficulty breathing). However, I asked him to look at his frontal fontanel (the front soft spot) because it seemed so large to me. He said that it was abnormal and was concerned about it staying large to compensate for possible craniosynostosis. So, he referred us to a Geneticist. However, he couldn't get us in until the end of June.

I heard the word craniosynostosis and was concerned (maybe flipped out a bit, I tend to be a worrier). The thought of waiting until late June to even be seen was not ok with me. Especially considering the geneticist would only refer us to a neurosurgeon, and who knew how long that would take? Thankfully, I work for an awesome neurologist who got me a referral to a pediatric neurosurgeon, Dr. Bui, at Ochsners.

We saw Dr. Bui that next week, and he was awesome! He was the first doctor who we didn't have to explain Pfeiffer syndrome to. He also looked at Grayson and felt his head and knew right away he had craniosynostosis. He believes his right coronal suture is closed and says that the right may be partially closed. He wanted a CT to confirm.

Dr. Bui told us about the different surgery options we have to face. To allow Grayson's skull to grow properly, he will need one of two types of surgery to release his fused suture. If only his right suture is closed, then the surgery we are facing is an endoscopic surgery at 2-3 months of age. They will make one small incision and use a scope with a camera to release the suture line. He will then have to wear a molding helmet for up to a year to help his skull grow correctly. This surgery is the least invasive, and he will only have to stay in the hospital a few days. However, if both sides are fused he will have to have a more invasive surgery that makes an incision from one ear to the other. They do this surgery usually between 6-8 months of age. He didn't tell us much about this surgery and the length of recovery.

We had Grayson's CT performed the other day (he was so good and slept through the whole thing! They said he was he best patient that day!). His pediatrician told us it did show that his right coronal was fused and that there is no internal damage (meaning he has a perfect little brain, just as we already knew). Hopefully this means he will only need the endoscopic surgery. We go back to Ochsner on April 10th to meet with the cranio-facial team of doctors and discuss surgery. I'm really hoping to get good news!

Please pray for my Grayson and his team of doctors (and my sanity)!